Saturday, January 9, 2010

Hopefully tomorrow we can hold an Angel...


Tomorrow will be day 2 and if the doctor says so, WE CAN HOLD HER! Poor baby girl she just doesn't understand why we aren't picking her up. Her eyes have spoken a million words today. Words of pain, confusion and just longing to be cuddled. She did fairly well during the night. No morphine until this morning and then we gave Tylenol then had to give morphine again. She moved her legs fine yesterday. The doctors and nurses in recovery and her in PCU were all pleased with how well she moves them. But this morning we noticed that they are very stiff and if you try to move them her whole body whences in pain. The good thing is that if we touch her very sensitive little feet she moves them like it tickles. So we know there is feeling there. Because this is progressive since this morning, they have called the doctor and they will be coming by.
The picture of Annabel and her pretty pink flowers from the West family is above. What we didn't know was that no live flowers are allowed her at TCH. I am so said because they were such beautiful daisies and they went through all the trouble to bring them to her on this freezing cold day! Thank you to Kevin and Michele for the endless amount of meals you prepared, Vivian's gold and the sweet, pink flowers.

Hopefully tomorrow she will be gently upright with some precious, happy smiles! We he says we can hold her we may never put her back down. We appreciate the prayers and we are so grateful that she has done this well.

Friday, January 8, 2010

Quick update...

This will be short be said I would update. She is still doing well. She is not resting but for short periods of time. The numbing in her back is wearing off and she is obviously becoming more uncomfortable so will probably do some pain meds soon. It will just affect her sats so we are trying as little as possible but will when need be. I will update in the morning. Sorry for my wording but with her having to be flat on her back she loves us by her side.

Let me say again, that I am overwhelmed by the comments, text, emails and facebooks...
Several people have email because not comfortable writing on blog and told me how Annabel has touched their lives or inspired something personal and it reminds me of her true purpose here on Earth. She truly doesn't need words to get her message across! Thank you and have a good night.

Amazing...

Again, she is amazing! She comes through with flying colors...This will be short.We are in PCU and she is resting peacefully. I think she looks at us and wonders why we can't pick her up. She has longing in those beautiful eyes. According to the neurosurgeon, everything went well. She tolerated the surgery as well as he expected. Now only time will tell what issues it may have resolved. I just want her to be free of pain. She stayed in recovery a little longer due to nausea and just a few low sats but overall she is doing well. They want her to stay in PCU to be monitored. My guess is if she has a good night maybe by tomorrow go to a regular floor. She has to be flat on her back for two days. They doctor says he will visit with us on Monday and then I think if all goes well we may get to go home. YEAH!

Thank everyone for the many calls, emails, text and comments. One thing that is sure is that with Trisomy 18 it is hard to be put to sleep and she continues to come through. It is only through God's graces and prayer that she does so well. Will update maybe later tonight.

Sleeping beauty...

Waiting patiently for her turn...

Everything is running a little behind today except us! We were here on time actually 20 min. early. They brought her back like 6:15. Her surgery was scheduled for 7:30. They took her back at 9:00 a.m. still with no IV. The neurosurgeon talked with us and I was surely under the impression that they would just go in and clip her tethered cord. He explained this is a major surgery and that it would take 2 1/2 to 3 hours once they began. Then she would be in recovery for a while of course. They had some concerns and considered cancelling the surgery due to her UTI infection. But it was decided to proceed. I probably would have cried since I am so ready for this to see if it helps a multitude of her issues, especially the oxygen sats. I have tons of confidence in all the doctors involved which is a great feeling.

The MRI of the brain that was done Tuesday did reveal a cyst. We are going to watch this for a bit as he is not sure if or what this is affecting. The tethered cord repair and the cyst are some common issues with Trisomy 18 children. We are new to him as a patient so I am sure we will talk more in follow up visits. So thank you for your calls and all the prayers for Annabel.

Wednesday, January 6, 2010

Long Day Yesterday...












Yesterday was a very long day but we knew it would be. Most everything ran as scheduled so we were able to make all the appointments.
Her first appointment was for her eyes. She did great as always. We have noticed that she seems to reach all around objects not directly at them at times. It seemed better when I would put my readers on her that she could reach right at them, but maybe just coincidence. So she does have some vision loss but the dr. says we will recheck in 6months. The scaring is still there on the left eye with too much dryness. Also her right eye is too dry. We were doing ointment when she slept but now we need to wake and doing it more during the night while she sleeps and several times daily. This is because Annabel sleeps with her eyes open and so the dryness occurs. This is a very common occurrence with Trisomy 18 babies sleeping with their eyes open. When I say open, not fully but you can definitely see her eyeballs when asleep. The goal is to keep them from becoming so dry to cause more damage. This will also be reassessed in 6 months to see if there is improvement. She agreed that if all possible she needs to not do the bi-pap due to the air that escapes under the mask (no matter how well it seals) it causes harm to her eyes. With everything there is a trade off with her. At this point the nasal cannula with oxygen is keeping her from having too many episodes of not breathing.
After this we had to do surgery admission for Friday and then anesthesia pre-admit. After this we had to go for the Kangaroo team to place her IV for sedation for the two MRI's. This save much poking and proding as with their ultrasound machine they are able to get a good vein and she is such a brave little girl. You can see the tears in her eyes and whincing with pain but she never once cries out. Of course watching her make me sad that she is so strong. It is obvious she know that crying won't get her out of it. Love this girl so much and I probably need to practice some her strength daily.

Then finally for the MRI's. We will not have results til later in the week and maybe not until we have the surgery. They are not expecting a normal brain MRI, just because they say they know there are issues. (What does this mean???) The spine they are just making sure since the last MRI was done in 2007. She did have several episode of not breathing as we expected but were totally manageable with oxygen and intubation. She was tough to wake but she had not had much sleep the two nights before, just because she didn't want to sleep. Once she woke she made the entire trip home without sleeping.

Thanks to all for the calls, prayers, emails, text and total support for Annabel. I never want to take any surgery lightly but Friday's surgery from what I understand will not be near as hard on her as her surgery in June. The issue is always being put to sleep but God continues to hold her tightly in his hand when we can't and have no control!!! Will keep you posted and hoping that your week to this new year goes well.